'Feeling like you can't do anything because you don't know where to start'-Parents' Perspectives of Barriers and Facilitators to Accessing Early Detection for Children at Risk of Cerebral Palsy.
Sue-Anne Davidson, Ashleigh Thornton, Deborah Hersh and 3 others
PMID 40435382WHAT IT FOUND
Mothers of children referred late to cerebral palsy early detection services described feeling lost, unsupported, and forced to become advocates.
They said plain language information, stable relationships, and clearer referral pathways would have helped.
Key findings
01Mothers said delayed access left them unsure what to do and pushed them to advocate for their child.
02System structures, including service location, workforce turnover, long waitlists, and unclear referral processes, were described as barriers to early detection.
03Mothers attributed some diagnostic delays to watchful waiting and to other health priorities taking precedence.
STILL TO COME
How it was doneWhat they foundWhat it means for PTs
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What it does not show
Only eight mothers took part, and no fathers participated, so the findings cannot be treated as all parents' experiences. Interviews happened on average 5 years after early intervention referral, so recall may have affected details. Children in the sampling frame were referred at an average corrected gestational age of 19 months (range 6-49), and most were referred before the guidelines were fully implemented, so current service pathways may differ. The study did not claim saturation, and some groups known to face barriers, including Aboriginal, culturally and linguistically diverse, and country families, were still underrepresented.
Declared interests
The authors declared no conflicts of interest.
The easy way to misread this
Do not read these eight mothers' accounts as proof that early detection services are ineffective or that clinicians caused the delays. The study reports experiences of late referral and cannot show what happened for all families or whether services improved outcomes.